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Statement in Support of Revising the Uniform Determination of Death Act and in Opposition to a Proposed Revision
Abstract
Discrepancies between the Uniform Determination of Death Act (UDDA) and the adult and pediatric diagnostic guidelines for brain death (BD) (the “Guidelines”) have motivated proposals to revise the UDDA. A revision proposed by Lewis, Bonnie and Pope (the RUDDA), has received particular attention, the three novelties of which would be: (1) to specify the Guidelines as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an apnea test without consent and even over a proxy’s objection. One hundred seven experts in medicine, bioethics, philosophy, and law, spanning a wide variety of perspectives, have come together in agreement that while the UDDA needs revision, the RUDDA is not the way to do it. Specifically, (1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD in a non-BD patient, provides no benefit to the patient, does not reliably accomplish its intended purpose, and is not even absolutely necessary for diagnosing BD according to the internal logic of the Guidelines; it should at the very least require informed consent, as do many procedures that are much more beneficial and less risky. Finally, objections to a neurologic criterion of death are not based only on religious belief or ignorance. People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion.
... The sources of disagreement and controversy are many and varied, and it is beyond the scope of this article to review them all (for a brief overview of the different positions on this subject, see D. A. [56,75]. Suffice it to say that the debates take place on metaphysical and ethical arenas, and to a lesser extent on scientific and philosophy of science arenas [30,37]. ...
... Some of these experts have proposed other alternatives to clarify this criterion of BD or to change it to another criterion. Alan Shewmon listed some of the main alternatives for the determination of BD (D. A. [56]. 3 Although these proposals are of great interest, we believe that they are solutions that do not take into account all aspects of this problem. ...
... The biological concept of death, 2. A non-biological, consciousness-based, "higher brain" concept of death, 3. The physiological-psychological hybrid of irreversible apneic unconsciousness and, 4. Recognize BD explicitly as a legal fiction or legal status. All these alternatives are collected and explained in the article Statement in Support of Revising the Uniform Determination of Death Act and in Opposition to a Proposed Revision (D. A.[56]. ...
The debate over the determination of death has been raging for more than fifty years. Since then, objections against the diagnosis of brain death from family members of those diagnosed as dead-have been increasing and are causing some countries to take novel steps to accommodate people's beliefs and preferences in the determination of death. This, coupled with criticism by some academics of the brain death criterion, raises some questions about the issues surrounding the determination of death. In this paper, we discuss some of the main approaches to death determination that have been theoretically proposed or currently put into practice and propose a new approach to death determination called "weak pluralism" as a reasonable ethical and political alternative to respect diversity in death determination.
... There has been a somewhat exasperating repetition of the claim that there is a mostly settled, worldwide consensus that brain death is death (Wijdicks 2001;Greer et al. 2020). This is false (Yang and Miller 2015;Shewmon 2021). As mentioned above, the "consensus" about brain death, such as it is, is grounded in at least three distinct and mutually inconsistent views about why brain death is thought to be death. ...
... One might argue that brain death is not death on physiological grounds, because the organism continues to function in maintaining homeostasis and resisting entropy (Shewmon 2001;Miller and Truog 2012;Nair-Collins and Miller 2017). Indeed, one of the core views defending brain death, the personhood view, agrees that the body is still-living. ...
... Indeed, one of the core views defending brain death, the personhood view, agrees that the body is still-living. One might also bypass any explicit theory about biological death and simply point out that, whatever is the best theory, corpses do not gestate fetuses, grow, or sexually mature, nor manifest greater physiologic stability on home ventilation as compared to another patient who is surely alive but unstable and dying in an Intensive Care Unit (ICU) (Shewmon 2010). Some argue that the case for accepting brain death as death has not been sufficiently established and therefore it should not be accepted (Pellegrino 2008). ...
A "universalist" policy on brain death holds that brain death is death, and neurologic criteria for death determination are rightly applied to all, without exemptions or opt outs. This essay argues that advocates of a universalist brain death policy defend the same sort of coercive control of end-of-life decision-making as "pro-life" advocates seek to achieve for reproductive decision-making, and both are grounded in an illiberal political philosophy. Those who recognize the serious flaws of this kind of public policy with respect to abortion must apply the same logic to brain death.
... There has been no systematic study to repeat the diagnostic test for brain death in intervals to see if the diagnosis is reproducible. Second, repeated reports of violating established diagnostic protocols [16][17][18] [19,20]. ...
... There is no independent proof that such a diagnosis is not false positive because the evidence is all erased by promptly disposing of the body or subjecting it to organ procurement. As mentioned in 2.3, anecdotal cases of diagnostic errors have been reported [19,20]. Moreover, the AAN's main journal, Neurology, reported many reports of noncompliance to their guidelines [16][17][18]. ...
This chapter reviews fundamental ethical controversy surrounding the ongoing effort to revise the Uniform Determination of Death Act in the United States. Instead of focusing on the process of the revision itself, the chapter explores the underlying ethical debate over brain death that has been ongoing for many decades and finally culminated in this revision. Three issues are focused: the requirement for consent and personal exemptions before applying brain death for the diagnosis of death; redefining the areas of the brain that have ceased to function in the definition of brain death; and codifying the American Academy of Neurology as the authority to issue the standards of the diagnosis of brain death. The chapter concludes that allowing the personal choice of death determination gives a pragmatic compromise to the disputed definition and practice of diagnosing brain death. So long as all risks and imperfections of the diagnosis are accepted through the consenting process, there is nothing ethically objectionable to continuing the current practice of diagnosing brain death as a successful tool to facilitate heart-beating organ donation without violating the dead-donor rule. By contrast, precluding personal choice and imposing legal restrictions to consent and exemptions would further erode public trust.
... [77][78][79] Areas of ongoing ethical and policy debate include whether the diagnosis of brain death requires demonstrable absence of all functions of the brainstem or the entire brain (including neurohormonal functions of the hypothalamus and pituitary gland), whether to distinguish permanent from irreversible dysfunction, 80,81 how to achieve consistency between prevailing definitions and diagnostic schemata, and whether brain death should be regarded as biological death or legal death of the human organism in the presence of ongoing cardiopulmonary function supported by mechanical ventilation or extracorporeal membrane oxygenation. [77][78][79][82][83][84] The Uniform Law Commission is meeting in 2021 to decide whether to recommend that the Uniform Determination of Death Act (UDDA), which was approved as model legislation governing death determination in the United States in 1981, should be revised in response to current controversies. 85,86 While the UDDA currently requires the irreversible cessation of all brain function, the AAN guidelines on brain death do not require the loss of hypothalamic function, which is sometimes present in patients who meet the AAN brain death criteria. ...
... 87 There is increasing recognition that these possible discrepancies between or within law and clinical guidelines should be addressed. [77][78][79][82][83][84] ...
Neuroethical questions raised by recent advances in the diagnosis and treatment of disorders of consciousness are rapidly expanding, increasingly relevant, and yet underexplored. The aim of this thematic review is to provide a clinically applicable framework for understanding the current taxonomy of disorders of consciousness and to propose an approach to identifying and critically evaluating actionable neuroethical issues that are frequently encountered in research and clinical care for this vulnerable population. Increased awareness of these issues and clarity about opportunities for optimizing ethically-responsible care in this domain are especially timely given recent surges in critically ill patients with unusually prolonged disorders of consciousness associated with coronavirus disease 2019 (COVID-19) around the world. We begin with an overview of the field of neuroethics: what it is, its history and evolution in the context of biomedical ethics at large. We then explore nomenclature used in disorders of consciousness, covering categories proposed by the American Academy of Neurology, the American Congress of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research, including definitions of terms such as coma, the vegetative state, unresponsive wakefulness syndrome, minimally conscious state, covert consciousness, and the confusional state. We discuss why these definitions matter, and why there has been such evolution in this nosology over the years, from Jennett and Plum in 1972 to the Multi-Society Task Force in 1994, the Aspen Working Group in 2002 and up until the 2018 American and 2020 European Disorders of Consciousness guidelines. We then move to a discussion of clinical aspects of disorders of consciousness, the natural history of recovery, and ethical issues that arise within the context of caring for persons with disorders of consciousness. We conclude with a discussion of key challenges associated with assessing residual consciousness in disorders of consciousness, potential solutions and future directions, including integration of crucial disability rights perspectives.
... Although the UDDA has been in place for 40 years, there has been a growing sentiment that it needs to be changed [12][13][14][15][16]. In response to these concerns, the Uniform Law Commission (ULC) created a drafting committee in 2021 to discuss changes to the UDDA [17]. ...
Background
There have been growing sentiments that the Uniform Determination of Death Act needs to be revised. One suggestion is to include a conscience clause, that is, allowing patients to “opt-out” of brain death determination. Understanding public attitudes toward a conscience clause may help inform policymakers and future proposed revisions. Therefore, we sought to investigate informed public attitudes toward continued medical support after the determination of brain death.
Methods
A nationwide online survey was distributed by a third-party provider. The survey had three components: (1) a 2-min educational video that explains five basic facts of brain death, (2) a validated five-item questionnaire to measure understanding of brain death, and (3) a six-item questionnaire to measure informed public attitudes toward a family’s request to continue medical support for a patient with brain death. Attitudes were measured on a seven-point Likert scale. A multiple linear regression model was developed to identify predictors of attitudes toward opting out of brain death. Analysis of variance with a post hoc Tukey test was used to compare attitudes across categorical demographic variables.
Results
We collected 1386 responses from participants across 49 states. The average five-item knowledge score was 88%. A total of 41.9% of all participants agreed that the hospital should be required to continue treatment for an individual with brain death if their family rejects brain death. A total of 24.4% and 27.3% of participants would request further treatment for themselves and a family member after a determination of brain death, respectively. Multiple linear regression identified attitudes for oneself and for a family member, age greater than 65 years, understanding that brain death is legal death, and male sex as predictors of attitudes toward requiring continued treatment (F(6, 1380) = 142.74, adjust R ² = 0.38, p < 0.001).
Conclusions
Nearly half of the participants would require hospitals to continue treatment for families who reject brain death as death. Future discussions on revising the Uniform Determination of Death Act to adopt a conscience clause should consider informed public attitudes.
... Of course, there are rare reports of patients who have regained conscious awareness after the diagnosis of brain death, such as the famous case of Zack Dunlap [96]. In all these cases, there is insufficient evidence to confirm that the death determination was formally appropriate, except for one exception to be discussed later [97]. ...
In 2017, Michael Nair-Collins formulated his Transitivity Argument which claimed that brain-dead patients are alive according to a concept that defines death in terms of the loss of moral status. This article challenges Nair-Collins’ view in three steps. First, I elaborate on the concept of moral status, claiming that to understand this notion appropriately, one must grasp the distinction between direct and indirect duties. Second, I argue that his understanding of moral status implicit in the Transitivity Argument is faulty since it is not based on a distinction between direct and indirect duties. Third, I show how this flaw in Nair-Collins’ argument is grounded in the more general problems between preference utilitarianism and desire fulfillment theory. Finally, I present the constructivist theory of moral status and the associated moral concept of death and explain how this concept challenges the Transitivity Argument. According to my view, brain death constitutes a valid criterion of death since brain death is incompatible with the preserved capacity to have affective attitudes and to value anything.
... See also Troug and Miller (2012); Nair-Collins (2015); Pope (2019). See also Shewmon (2021); Shewmon (2001). 12 For illuminating discussions of these points, see Rhymes et al. (2000); Huddle and Bailey (2012); Jansen (2006); Gill (2015); Sulmasy (2007); Zelner et al. (2009). ...
The Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants instructs clinical ethics consultants to preserve their professional integrity by “not engaging in activities that involve giving an ethical justification or stamp of approval to practices they believe are inconsistent with agreed-upon standards” (ASBH, 2014, p. 2). This instruction reflects a larger model of how to address value uncertainty and moral conflict in healthcare, and it brings up some intriguing and as yet unanswered questions—ones that the drafters of the Code, and the profession more broadly, should seek to address in upcoming revisions. The objective of this article is to raise these questions as a way of urging greater clarification of the Code’s overall approach to professional integrity, its meaning, and implications.
... 1 The epistemic problem: we cannot make the diagnosis of either permanent or irreversible BD because potentially reversible confounders or mimics are almost always present (e.g., central thyroid and/or adrenal deficiency, high cervical cord injury from brain herniation, global ischemic penumbra, and, with primary brainstem injury, total locked-in state). 1,5,12 At least 6 published cases of false-positive diagnoses of BD attest to these epistemic problems. 1,12 I conclude that the criterion for biological death is irreversible loss of circulation. ...
I argue that death is irreversible and not merely permanent. Irreversible means a state cannot be reversed, and entails permanence. Permanent means a state will not be reversed, and includes cases where the state could still be reversed even though a decision has been made not to attempt this reversal. This distinction is important, as we shall see. Four reasons are given for why death must be irreversible and not merely permanent: no mortal can return from the state of death; unacceptable implications regarding culpability for actions and omissions; death is a physiological state; and irreversibility is inherent in the standards to diagnose brain death. Four objections are considered including: permanence is the medical standard, permanence was the intent of the President’s Commission on Defining Death, irreversible requires many hours to occur, and we should change terminology to reflect our case intuition. These objections and discussed and rejected. Finally, I clarify my views to conclude that the criterion for biological death is irreversible loss of circulation.
... Objections to BD/DNC determination, some of which have led to highly publicized lawsuits, prompted the question of whether the UDDA should require consent before BD/DNC evaluation. 6,10,[18][19][20][21] The BD/DNC evaluation for coma and brainstem areflexia is a more thorough version of routine examinations performed for all patients in the intensive care unit (ICU) with acute brain injury. However, there are potential risks of the apnea test; it could (1) cause cardiopulmonary decompensation or (2) potentially exacerbate brain injury as a result of induced hypercapnia and acidosis. ...
The Uniform Determination of Death Act (UDDA) revision series in Neurology® originated in response to the Uniform Law Commission’s plan to create a revised Uniform Determination of Death Act (rUDDA) to address contemporary controversies associated with brain death/death by neurologic criteria (BD/DNC) determination. This article contextualizes these, and other, controversies and reviews the extent to which they represent potential threats and impediments to the clinical practice of BD/DNC determination. It also explains the reasons that our rapidly evolving understanding of the brain’s ability to recover from injury should not influence the clinical practice of BD/DNC determination. Finally, it explores the myriad ways in which the American Academy of Neurology has addressed potential threats and impediments to the clinical practice of BD/DNC determination and the implications potential changes to the UDDA may have on the future of the clinical practice of BD/DNC determination.
... 8 Moreover, just as recent cases question whether there is a duty to accommodate requests to continue somatic support after DNC, commentators increasingly ask whether there is a parallel duty to accommodate requests before DNC, namely requests to abstain from (or at least delay) DNC. [9][10][11][12][13] Determination of death by neurologic criteria constitutes a set of medical interventions that would ordinarily require consent ...
This article addresses the following question: should physicians obtain consent from the patient (through an advance directive) or their surrogate decision-maker to perform the assessments, evaluations, or tests necessary to determine whether death has occurred according to neurologic criteria? While legal bodies have not yet provided a definitive answer, significant legal and ethical authority holds that clinicians are not required to obtain family consent before making a death determination by neurologic criteria. There is a near consensus among available professional guidelines, statutes, and court decisions. Moreover, prevailing practice does not require consent to test for brain death. While arguments for requiring consent have some validity, proponents cannot surmount weightier considerations against imposing a consent requirement. Nevertheless, even though clinicians and hospitals may not be legally required to obtain consent, they should still notify families about their intent to determine death by neurologic criteria and offer temporary reasonable accommodations when feasible. This article was developed with the legal/ethics working group of the project, A Brain-Based Definition of Death and Criteria for its Determination After Arrest of Circulation or Neurologic Function in Canada developed in collaboration with the Canadian Critical Care Society, Canadian Blood Services, and the Canadian Medical Association. The article is meant to provide support and context for this project and is not intended to specifically advise physicians on legal risk, which in any event is likely jurisdiction dependent because of provincial or territorial variation in the laws. The article first reviews and analyzes ethical and legal authorities. It then offers consensus-based recommendations regarding consent for determination of death by neurologic criteria in Canada.
... and providers without substantial guidance. There remains even substantial international controversy regarding the diagnosis of brain death and its moral implications, especially when the body remains biologically alive (Shewmon, 2021). The Christian ends proper to medicine are not written indelibly in its practice as matters for philosophy to discern through practical wisdom alone. ...
How can we definitively determine which biomedical choices are morally correct and which engage in seriously wrongful acts? Depending on whom one asks, one is informed that choices such as abortion, euthanasia, and significant body modification involve real moral harm (either as forms of murder or as denying the goodness of the body that God has provided), or that disallowing such “medical care” violates the basic rights of persons (where abortion, active euthanasia, and body modification are appreciated as positive expressions of personal autonomy). Secular bioethics appears no longer able to appreciate what could possibly be wrong with such activities, provided that the individuals involved consent in some fashion. Indeed, many actions that were once openly and easily recognized as sinful have become so commonplace, as well as politically desirable, as to appear as if they were obviously good. As the authors in this issue of Christian Bioethics explore, fully to appreciate the serious moral issues raised by modern medicine requires a foundational orientation to the Christian God.
... active debate on whether the UDDA is an appropriate statutory definition of death. [17][18][19] Medical students tend to have a poor knowledge of the criteria of brain death diagnosis, 5,6,8 yet little investigation has gone into students' attitudes toward different conceptions of death. ...
Background and Objectives
Varied meanings of death within medicine, bioethics, and society at large often produce disagreement and frustration between physicians and surrogate decision makers. We investigated whether teaching medical students about the philosophical aspects of death would change their attitude toward surrogate decision makers who assert nonstandard views of death.
Methods
An 80-minute lecture covering philosophical debates surrounding medico-legal standards of death was given to second-year medical students at Oakland University William Beaumont School of Medicine during a neuroscience course. Participants completed a questionnaire containing Likert scale and open-ended questions before and after the intervention assessing their acceptance of, frustration toward, and likelihood of accommodating a request for surrogate decision makers who posited either a whole-brain, high-brain, or circulatory view of death. Change in knowledge was analyzed using the McNemar test, whereas attitudinal scores were compared with paired t tests. Open-ended responses were narratively analyzed to identify themes that elaborate quantitative findings.
Results
A total of 43 paired responses were analyzed from second-year medical students. Following the intervention, students expressed less frustration ( χ ¯ diff = −0.64, 95% CI −0.15 to −1.15), greater likelihood of accommodating ventilator removal ( χ ¯ diff = 0.60, 95% CI 0.41–0.85), and greater acceptance ( χ ¯ diff = 0.63, 95% CI 0.28–0.91) of surrogates who endorsed a whole-brain view of death. Although students rated the high-brain view as more acceptable after the lecture ( χ ¯ diff = 0.63, 95% CI 0.28–0.91), they were not more likely to remove a ventilator from a patient who had experienced high-brain death ( χ ¯ diff = 0.19, 95% CI −0.30 to 0.67). Students were less likely to continue artificial ventilation for a brain-dead patient ( χ ¯ diff = −0.61, 95% CI −0.91 to −0.30) despite no change in frustration toward the surrogate ( χ ¯ diff = −0.26, 95% CI 0.20 to −0.70).
Discussion
Changes in attitudes across the 3 views of death suggest that increased awareness of the philosophical debate facilitates reflection of students' understanding and opinion of death. These findings support implementation of educational interventions to prepare students for future work with surrogate decision makers holding diverse sets of views on death.
... It is compelling to many in the neurosciences and is one of the most popular 223 current theories. Regrettably, we do not know the mechanisms, if any, that are capable 224 of assembling the information in the brain. 225 consciousness theorists have claimed that it is a principal component of information that 226 cannot be explained. ...
Neuroscience has affirmed that consciousness is related to the function of the brain, 14 although some disagree. To bridge the gulf between brain and consciousness, we require neural 15 data, computational and psychological models, and philosophical analysis to identify principles 16 that connect brain activity to conscious experience in an illuminating way. We endeavor to identify 17 such principles. The notion of neuroscientific explanation conceives consciousness as providing 18 informative answers to concrete questions that neuroscientific approaches can address. Our 19 cognitive capacity to determine whether something is alive or not is a function of learning and 20 generalization as well as based on scientific knowledge. We can intuit the existence of "living 21 beings," thereby rendering the determination of life intuitive. Plants are alive, bacteria certainly so, 22 as are fish and maybe spores, but they may or may not be conscious. consciousness is removed 23 from the discussion of the construct of consciousness as a scientific argument but leaves the 24 determination of both life and Death as a practical clinical endeavor with bioethical considerations. 25
... Recently and for the first time since 1981, the brain criterion of death is under revision. Some revision proposals focus only on the cessation of spontaneous breathing and capacity for consciousness-rather than the cessation of all functions of the entire brain,-as a way to determine brain death (see Shewmon 2021). ...
Laura Specker Sullivan (2022) makes a fairly compelling case for the value of the perspectives of Buddhist practitioners in neuroethics. In this study, Tibetan Buddhist monks have been asked, among other things, whether consciousness, in brain-injured patients in a minimally conscious state, entails a duty to preserve life. In our view, some of the participants’ responses could be used to inform the bioethical debate on death determination.
... There are several cases with reported "miraculous" recovery from brain death diagnosis such as the case reported in the USA of Zack Dunlap who had an accident in 2007 and was declared brain dead (Shewmon, 2021). The case was 'undocumented' hence it does 31 not represent a recovery from brain death but rather a negligible misdiagnosis. ...
There is a significant and chronically unmet need for donated organs from deceased donors. Despite generally positive views in the UK, donation rate remains low. It is imperative to understand what the public think about this issue if organ donation campaigns are to be effective and successful in addressing a particular group. This research investigates the public’s views through a subjective perception of a network of barriers and motivators. This research investigates the views on organ donation in the UK. This research is a mixed method research which consists of two studies: study one and two. Study one’s objective is to identify distinctive views on organ donation in the UK using Q-methodology and interviews. Q-methodology uses qualitative and quantitative methods to explore the subjective perceptions of people in relation to a particular subject. Forty participants sorted 47 statements on organ donation on a Q grid. Factor analysis was then conducted using Centroid method and Varimax rotation. Six views were found but only four views were interpreted: The Realist, the Optimist Hesitant, the Convinced Pessimist and the Empathetic. Salient barriers to organ donation presented in each view suggest that perceived lack of knowledge, death anxiety, mistrust in the healthcare system and lack of cue to action are the main barriers to organ donation. Consensus statements suggest that religion and family agreement are inconsequential if attitude to organ donation is well formed. Study two used post-Q survey method to identify the prevalence of each view in the UK. Self-categorisation to abbreviated factor descriptions (vignettes) method was used to transform Q-methodology views to four vignettes with 100-140 words each. A total of 385 participants were asked to rate and then rank four vignettes based on how much they reflect their view on organ donation. Results showed that the Empathetic view is the most common view in the UK, followed by the Realist, the Optimist Hesitant, and the Convinced Pessimist successively. Results suggest no relationship between views and other demographic, social and organ donation attitude criteria. This research demonstrated the importance of subjective perception in forming an attitude to organ donation. It suggests that ‘one size does not fit all’ when it comes to designing behavioural interventions, and subjective perception is an important variable in addressing low organ donation rate in the UK.
... At issue are a number of factors that have been the subject of extensive debate in the medical, legal, and bioethical literature for years, including the "lack of uniformity in the medical standards used to determine death by neurologic criteria, the relevance of hormonal functions, and whether notice should be provided before a determination of death" (ULC, 2020). Numerous concerns with the existing law or application of it, as well as proposals for revising the UDDA, have been published in recent years (see, e.g., Lewis et al., 2019;Shewmon, 2021). ...
This is the third installment in a Christian Bioethics series that gathers leading voices in Christian bioethics to examine the themes and issues they find most pressing. The papers address fundamental theoretical questions about the nature of Christian bioethics itself, long-standing ethical issues that remain significant today, including physician-assisted suicide, euthanasia, the definition of death, the allocation of scarce resources, and finally, more futuristic questions regarding transhumanism. The contributions underscore the enduring significance of Christian engagement in bioethics.
... Although it has served as a model statute for 40 years, and has been embraced in whole or in part throughout the United States, 2 there is a growing recognition that the UDDA must be updated. [3][4][5] The Uniform Law Commission recently approved a Study Committee's recommendation to form a Drafting Committee that should submit its proposed UDDA revisions by July 2023. Meanwhile, Nevada, Oklahoma, and Texas have already moved to amend their own UDDA statutes (NV. ...
Although the Uniform Determination of Death Act (UDDA) has served as a model statute for 40 years, there is a growing recognition that the law must be updated. One issue being considered by the Uniform Law Commission’s Drafting Committee to revise the UDDA is whether the text “all functions of the entire brain, including the brainstem” should be changed. Some argue that the absence of diabetes insipidus indicates that some brain functioning continues in many individuals who otherwise meet the “accepted medical standards” like the American Academy of Neurology’s. The concern is that the legal criteria and the medical standards used to determine death by neurological criteria are not aligned. We argue for the revision of the UDDA to more accurately specify legal criteria which align with the medical standards: brain injury leading to permanent loss of a) the capacity for consciousness, b) the ability to breathe spontaneously, and c) brainstem reflexes. We term these criteria “neuro-respiratory criteria” and show that they are well-supported in the literature for physiological and social reasons justifying their use in the law.
... While issues of conscience are often seen in terms of the abortion and medical aid in dying or assisted suicide debates debates, it shows up at least implicitly in many other contexts, including decisions regarding the determination of death(Shewmon, 2021), the deactivation of cardiac devices(Pilkington, 2020), and expanding access to investigational drugs(Buckley and O'Neil, 2020). For exploration of the role of religion in medicine and bioethics (seeCamosy, 2021;Blackford and Schuklenk, 2021;Goss and Bishop, 2021;Parks, 2021;Smith and Audi, 2021;Stempsey, 2021).Content courtesy of Springer Nature, terms of use apply. ...
The proper role of conscience in healthcare continues to be a topic of deep interest for bioethicists, healthcare professionals, and health policy experts. This issue of HEC Forum brings together a collection of articles about features of these ongoing discussions of conscience, advancing the conversations about conscience in healthcare from a variety of perspectives and on a variety of fronts. Some articles in this issue take up particularly challenging cases of conscientious objection in practice, such as Fleming, Frith, and Ramsayer’s contextually rich piece on midwives in Scotland or Harter’s professionally grounded analysis; others engage the changing institutional landscapes which impact considerations of conscience, such as Cummins’ work on the role of employers in institutional policies about conscience and Ben Moshe’s discussion of publicity and institutional committees. Pieces by Howard and Pilkington both raise conceptual considerations about how we think about the role of conscience in medicine, questioning the use of “conscientious objection” in these discussions, and Byrnes pushes back on the most influential work in this area by Mark Wicclair. The issue concludes with a piece by Wicclair, which engages each of these distinct offerings, further extending the discussions of conscience in healthcare and helpfully connecting key themes discussed by authors in this issue to his contributions and to the longer tradition of discussions of conscience in medicine. This issue challenges readers to engage different arguments from different perspectives and asks them—in some cases—to be open to revising how they think about the role of conscience and the existence of and justification for conscientious objection in the dynamic, interdisciplinary fields of healthcare.
At age 21, following a severe traumatic brain injury, Zack Dunlap was declared brain-dead according to the American Academy of Neurology guideline (Guideline) when he met the clinical criteria of brain death (minus apnea testing because of bradycardia) with technetium-99m diethylene-triamine-pentaacetate scintigraphy reported as showing no intracranial blood flow. His parents agreed to organ donation. During preparations for organ donation, Zack manifested a purposeful movement in response to a noxious stimulus made by his cousin. Following subsequent neurological recovery, he has returned to a normal life, holding steady employment and raising a family. During an interview, he reported that while in coma, he heard a doctor say that he was brain-dead and felt angry about it. His experience fits the phenomenon of cognitive-motor dissociation. Recently, Zack's medical records were made available to the first author. A critical review of the records uncovered a problem inherent in the logic of the Guideline algorithm regarding brain blood flow scintigraphy. This article discusses the lessons drawn from Zack's case, namely, that both the aforementioned problem and the occurrence of cognitive-motor dissociation in patients deemed to be brain-dead can pose a significant risk of a false-positive declaration of death.
The articles in this issue of the Journal of Medicine and Philosophy explore emerging technologies, medical innovations, and shifting moral norms, expanding present discussions around topics in bioethics both old and new. Some question whether novel definitions of death and harm change the moral permissibility of killing, particularly at the hands of a physician. Others question how increased or decreased abilities affect responsibility and achievement. Another illustrates how rhetorical appeals to character have been used to justify otherwise morally illicit actions within the clinic. Together, these articles shed new light on topics in the field of bioethics.
Secular bioethics fails to grasp the central moral and spiritual realities of medicine. As the authors in this issue of Christian Bioethics argue, contemporary healthcare practice is often based on the false premise that medical science can secure the safety of human life. Yet, the standard “biopsychosocial model” of medicine fails to grasp the theological dimensions of healthcare often harming patients and their families in the process. Indeed, as the articles explore, all too often secular bioethics manipulates medicine to achieve immoral purposes, such as active euthanasia of the sick or elderly. Such spiritual decay is acutely manifested in the pressure put on patients to accept an economically efficient and medically expedient assisted death as well as in how society often treats the human body as mere res—a thing unimportant in itself apart from animation as a living person. Together the articles illustrate that without careful religiously grounded advice modern medicine is often spiritually disorienting for both patients and practitioners.
Looking to Scripture through the eyes of contemporary medical experience, I analyze the meaning of the criteria used for determining death, specifically in the light of Jesus’ final moments and the resurrection of the Shunammite’s son in 2 Kings, chapter 4. I argue that four theses are consistent with, and informed by, these passages that can help guide Christian belief and decision-making about how death is determined in the clinical context: (1) death is neither permanent nor irreversible; (2) something like the “brain-dead” state is, at best, a confounding state that requires one to “pace and pray” or let go; (3) that the case for determining death by neurologic criteria depends on the “working togetherness” of the body’s parts for the sake of impacting its environment; and (4) that the practice of neurologically based death determination is a response to the problem of disaggregation of the human form into its organ systems that modern critical care medicine makes possible. I end with advice about how Christians might approach the debates over the law and practice, even if they cannot come to a consensus.
Purpose of review
The adoption of brain death played a crucial role in the development of organ transplantation, but the concept has become increasingly controversial. This essay will explore the current state of the controversy and its implications for the field.
Recent developments
The brain death debate, long limited to the bioethics community, has in recent years burst into the public consciousness following several high-profile cases. This has culminated in the reevaluation of the Uniform Determination of Death Act (UDDA), which is in the process of being updated. Any change to the UDDA has the potential to significantly impact the availability of organs.
Summary
The current update to the UDDA introduces an element of uncertainty, one the brain death debate had not previously had.
When the Uniform Law Commission (ULC) was recently in the process of revising the Uniform Determination of Death Act (UDDA), Neurology® ran a series of debates over certain controversial issues being deliberated. Omitted was a debate over the fundamental concept underlying brain death. In his introductory article, Bernat offered reasons for this omission: "It is not directly relevant to practicing neurologists who largely accept brain death, do not question its conceptual basis, …." In this article I argue the opposite: the fundamental concept of death is highly relevant to the clinical criteria and tests used to diagnose it. Moreover, most neurologists in fact disagree with the conceptual basis articulated by Bernat. Basically, there are 3 competing concepts of death: (1) biological: cessation of the integrative unity of the organism as a whole (endorsed by Bernat and the 1981 President's Commission), (2) psychological: cessation of the person, equated with a self-conscious mind (endorsed by half of neurologists), and (3) the vital work concept proposed by the 2008 President's Council on Bioethics. The first actually corresponds to a circulatory, not a neurologic, criterion. The second corresponds to a "higher brain" criterion. The third corresponds loosely to the UK's "brainstem death" criterion. In terms of the biological concept, current diagnostic guidelines entail a high rate of false-positive declarations of death, whereas in terms of the psychological concept, the same guidelines entail a high rate of false-negative declarations. Brainstem reflexes have nothing to do with any death concept (their role is putatively to guarantee irreversibility). By shining a spotlight on the deficiencies of the UDDA through attempting to revise it, the ULC may have unwittingly opened a Pandora's box of fresh scrutiny of the concept of death underlying the neurologic criterion-particularly on the part of state legislatures with irreconcilably opposed worldviews.
This Element considers current legal, ethical, metaphysical, and medical controversies concerning brain death. It examines the implicit metaphysical and moral commitments and dualism implied by neurological criteria for death. When these commitments and worldview are not shared by patients and surrogates, they give rise to distrust in healthcare providers and systems, and to injustice, particularly when medicolegal definitions of death are coercively imposed on those who reject them. Ethical obligations to respect persons and patient autonomy, promote patient-centered care, foster and maintain trust, and respond to the demands of justice provide compelling ethical reasons for recognizing reasonable objections. Each section illustrates how seemingly academic debates about brain death have real, on-the-ground implications for patients and their families.
The Uniform Law Commission paused work of the Drafting Committee to Revise the Uniform Determination of Death Act (UDDA) in September 2023.
Thematic review was performed of comments submitted to the Uniform Law Commission by medical organizations (MO), organ procurement organizations (OPO), and advocacy organizations (AO) from 1/1/2023 to 7/31/2023.
Of comments from 41 organizations (22 AO, 15 MO, 4 OPO), 34 (83%) supported UDDA revision (50% OPO, 33% MO recommended against revision). The most comments addressed modifications to “all functions of the entire brain, including the brainstem” (31; 95% AO, 75% OPO, 47% MO), followed by irreversible versus permanent (25; 77% AO, 50% OPO, 40% MO), accommodation of brain death/death by neurologic criteria (BD/DNC) objections (23; 100% OPO, 80% MO, 32% AO), consent for BD/DNC evaluation (18; 75% OPO, 47% MO, 36% AO), “accepted medical standards” (13; 36% AO, 33% MO, 0% OPO), notification before BD/DNC evaluation (14; 100% OPO, 53% MO, 9% AO), time to gather before discontinuation of organ support after BD/DNC determination (12; 60% MO, 25% OPO, 9% AO), and BD/DNC examiner credential requirements (2; 13% MO, 0% AO, 0% OPO). The predominant themes were that the revised UDDA should include the term “irreversible” and shouldn’t (1) stipulate specific medical guidelines, (2) require notification before BD/DNC evaluation, or (3) require time to gather before discontinuation of organ support after BD/DNC determination. Views on other topics were mixed, but MO and OPO generally advocated for the revised UDDA to take a functional approach to BD/DNC, not require consent for BD/DNC evaluation, and not require opt-out accommodation of BD/DNC objections. Contrastingly, many AO and some MO with religious affiliations or a focus on advocacy favored the revised UDDA take an anatomic approach to BD/DNC or eliminate BD/DNC altogether, require consent for BD/DNC evaluation, and require opt-out accommodation of BD/DNC objections.
Most commenting organizations support UDDA revision, but perspectives on the approach vary, so the Drafting Committee could not formulate revisions that would be agreeable to all stakeholders.
The determination of a patient's death is of considerable medical and ethical significance. Death is a biological concept with social implications. Acting with honesty, transparency, respect, and integrity is critical to trust in the patient-physician relationship, and the profession, in life and in death. Over time, cases about the determination of death have raised questions that need to be addressed. This American College of Physicians position paper addresses current controversies and supports a clarification to the Uniform Determination of Death Act; maintaining the 2 current independent standards of determining death, cardiorespiratory and neurologic; retaining the whole brain death standard; aligning medical testing with the standards; keeping issues about the determination of death separate from organ transplantation; reaffirming the importance and role of the dead donor rule; and engaging in educational efforts for health professionals, patients, and the public on these issues. Physicians should advocate for policies and practices on the determination of death that are consistent with the profession's fundamental and timeless commitment to individual patients and the public.
Is it possible to donate unpaired vital organs, foreseeing but not intending one's own death? We argue that this is indeed psychologically possible, and thus far agree with Charles Camosy and Joseph Vukov in their recent paper on “double effect donation.” Where we disagree with these authors is that we see double-effect donation not as a morally praiseworthy act akin to martyrdom but as a morally impermissible act that necessarily disrespects human bodily integrity. Respect for bodily integrity goes beyond avoiding the aim to kill: not all side effects of deliberate bodily interventions can be outweighed by intended benefits for another even if the subject fully consents. It is not any necessary intention to kill or harm another or oneself that makes lethal donation/harvesting illicit but the more immediate intention to accept or perform surgery on an (innocent) person combined with the foresight of lethal harm and no health-related good for him or her. Double-effect donation falls foul of the first condition of double-effect reasoning in that the immediate act is wrong in itself. We argue further that the wider effects of such donation would be socially disastrous and corrupting of the medical profession: doctors should retain a sense of nonnegotiable respect for bodily integrity even when they intervene on willing subjects for the benefit of others.
Summary: Lethal organ donation (for example, donating one's heart) is not a praiseworthy but a morally impermissible act. This is not because such donation necessarily involves any aim to kill oneself (if one is the donor) or to kill the donor (if one is the surgeon). Respect for bodily integrity goes beyond avoiding any hypothetical aim to kill or harm oneself or another innocent person. ‘Double effect donation’ of unpaired vital organs, defended by Camosy and Vukov, is in our view a form of lethal bodily abuse and would also harm the transplant team, the medical profession and society at large.
This chapter examines concepts and criteria of death and the coherence of their associations. Concepts of death fall into two broad categories: non-ontological and ontological. Non-ontological concepts include death as a cluster kind and death as a process; the corresponding criteria are stipulative, based on pragmatic concerns. Ontological concepts are essentially either psychological (cessation of “personhood,” equated with capacity for thinking and self-awareness) or biological (cessation of the human organism). The psychological concept corresponds to a “higher brain” criterion, namely irreversible, permanent nonfunction (destruction) of bilateral thalami (the sufficiency of neocortical destruction alone being uncertain); anatomically broader criteria are sufficient but not necessary. The biological concept corresponds to a criterion of irreversible, permanent cessation of circulation of oxygenated blood (irreversible cessation of brain function being necessary but not sufficient). Irreversible apneic unconsciousness is best understood not as a concept of death but as a stipulative criterion. Concepts of life and death and their corresponding criteria derive from fundamental worldviews, on which there has been no consensus for over two millennia, nor is there likely ever to be. Respect for deeply held fundamental worldviews requires allowance for personal specification of circulatory or brain-based criteria.
In this chapter, we discuss whether death requires permanent or irreversible cessation of function. We argue that death requires only permanent cessation of function, ultimately focusing on the application of this argument to determining death by neurologic criteria. Throughout history, we have relied on permanent cessation of function. The genuine possibility of reversing the cessation of function became real only from about the 1700s. The gradual introduction of the requirement of irreversibility reflects the ethical norm that everything should be done to revive a patient where this is possible and appropriate. However, this norm does not apply to patients for whom resuscitation is not appropriate. Since permanence covers both patient cohorts, it is a sound criterion for declaring death. Influential defenses of irreversibility, such as that of Don Marquis, are subjected to critical scrutiny.
The whole-brain criterion for death requires the absence of all functions of the entire brain. It follows logically that the preservation of any function of any part of the brain is not consistent with the whole-brain criterion for death. The hypothalamus is a part of the brain and has been shown to continue functioning in up to 50% of patients declared dead by neurologic criteria. Therefore, up to 50% of patients declared dead under the whole-brain criterion for death are false-positive misdiagnoses. Numerous responses have been offered to explain why preserved hypothalamic function is consistent with the whole-brain criterion for death. All these responses fail.
The neurologic determination of death has been debated almost since its inception. In this chapter, I explain how a legal fictions approach may be helpful for understanding and addressing persistent debates about the neurologic determination of death. Legal fictions are false statements made for some legal purpose, such as the idea that corporations are persons. Although these legal tools are not uncommon, they can be problematic when unacknowledged. Thinking of the neurologic determination of death as an unacknowledged legal fiction provides a way to understand its historical development. As a legal or policy matter, one way to reconcile seemingly intractable debates about how to determine death could be to move to acknowledge this fiction by building in reminders of its falsity, along with providing exemptions for those with deeply held views to the contrary. To the extent the terminology of “legal fictions” is unappealing, the neurologic determination of death could equally be understood as a legal status. Finally, in light of several proposals to revise the legal language for determining death by neurologic criteria, the theoretical basis for legal fictions can help warn of potential dangers in this process of revising the law.
The original conceptualization of death by neurologic criteria included the functions of the entire brain based on an intuitive understanding of the essential importance of the nervous system in defining a living human organism. Such a profound claim with social, cultural, medical, and legal implications requires an adequate justification that has been built over decades of debate and refinement in concepts. While the definitions of life and death may seem self-evident, a proper analysis reveals that they requires a complex understanding of biology that must be adjusted once a person becomes dependent on organ-supporting technology. While brainstem and higher-brain formulations have been well-designed and discussed in the literature, the whole-brain criterion is needed to sufficiently meet a complete biologic definition of life and death resulting from a catastrophic neurologic injury. As error cannot be tolerated in making a determination of death, implementing the whole-brain criterion is essential to avoid a false-positive declaration with medical certainty.
Diagnosis of death using neurological criteria is a construct which has been part of the clinical practice in the UK for nearly half a century. It has also been continuously endorsed by the judiciary during that period. This chapter looks back at its medico-legal journey to date, before looking ahead to the future.KeywordsAcademy of Medical Royal CollegesBrain stem deathJudgesCase lawStatutory definition of deathParliament
In response to concerns about the declaration of death by neurologic criteria, the Uniform Law Commission created a drafting committee to update the Uniform Determination of Death Act (UDDA) in the Fall of 2021. One of the key questions for the committee to address was the following: Should the revised UDDA address objections to the use of neurologic criteria to declare death? This article (1) provides historical background and survey results that demonstrate the need to address this question; (2) summarizes the ethical principles that support and oppose accommodation of objections to the use of neurologic criteria to declare death; (3) reviews accommodation in other areas of medicine and law; (4) discusses existing legal and hospital guidance on management of these objections; (5) examines perspectives of stakeholder medical societies and expert health care professionals, lawyers, ethicists, and philosophers on whether the revised UDDA should address these objections; (6) identifies some questions for the drafting committee to consider when deciding whether the revised UDDA should address objections to the use of neurologic criteria to declare death; and (7) summarizes the potential downstream effects of the drafting committee’s decision.
50 years after its introduction, brain death remains controversial among scholars. The debates focus on one question: is brain death a good criterion for determining death? This question has been answered from various perspectives: medical, metaphysical, ethical, and legal or political. Most authors either defend the criterion as it is, propose some minor or major revisions, or advocate abandoning it and finding better solutions to the problems that brain death was intended to solve when it was introduced. Here I plead for a different approach that has been overlooked in the literature: the philosophy of science approach. Some scholars claim that human death is a matter of fact, a biological phenomenon whose occurrence can be determined empirically, based on science. We should take this claim seriously, whether we agree with it or not. The question is: how do we know that human death is a scientific matter of fact? Taking the philosophy of science approach means, among other things, examining how the determination of human death became an object of scientific inquiry, exploring the nature of the brain death criterion itself, and analysing the meaning of its core concepts such as “irreversibility” and “functions”.
Fifty years after its introduction, brain death remains controversial among scholars. The debates focus on one question: is brain death a good criterion for determining death? This question has been answered from various perspectives: medical, metaphysical, ethical, and legal or political. Most authors either defend the criterion as it is, propose some minor or major revisions, or advocate abandoning it and finding better solutions to the problems that brain death was intended to solve when it was introduced. In short, debates about brain death have been characterized by partisanship, for or against. Here I plead for a non-partisan approach that has been overlooked in the literature: the epistemological or philosophy of science approach. Some scholars claim that human death is a matter of fact, a biological phenomenon whose occurrence can be determined empirically, based on science. We should take this claim seriously, whether we agree with it or not. Question is: how do we know that human death is a scientific matter of fact? Taking the epistemological approach means, among other things, examining how the determination of human death became an object of scientific inquiry, exploring the nature of the brain death criterion itself, and analysing the meaning of its core concepts such as “irreversibility” and “functions”.
Preprint available at F1000Research: https://doi.org/10.12688/f1000research.109184.1
After miscarrying in the hospital at eleven weeks, a patient gratefully accepts the hospital’s offer to take advantage of a program for low‐income patients that provides burial for fetal remains and a memorial plaque for the gravesite. However, a hospital employee accidentally incinerates the remains, and the error is not discovered until after the ashes are discarded. Two commentaries offer opposing arguments in response to the question whether, to avoid adding to the patient’s grief, it is ethically permissible for the clinicians not to disclose the error to her and to proceed with having the name put on a plaque at the burial ground.
The Uniform Determination of Death Act (UDDA), the recommended legal statute for determination of death in the United States, was initially formulated in 1981. Forty years later, because of the concerns of experts in medicine, law, ethics, and philosophy, the Uniform Law Commission (ULC) created a drafting committee to update the UDDA. The drafting committee, which has until 2023 to propose revisions to the ULC Executive Committee, will need to determine how to address the following key questions about the UDDA: (1) Should the term “irreversible” be replaced by the term “permanent”? (2) Is absence of hypothalamic-pituitary-axis-induced antidiuretic hormone secretion included in “all functions of the entire brain,” and if so, how can we reconcile the fact that this is not tested in the medical standards for determination of death by neurologic criteria published by the American Academy of Neurology and the Society of Critical Care Medicine, American Academy of Pediatrics, and Child Neurology Society? (3) What are the accepted medical standards for determination of death? (4) Is consent needed to determine death? and (5) How should objections to the use of neurologic criteria to declare death be handled? Once the ULC finalizes revisions to the UDDA, individual states will have the opportunity to decide whether to adopt the revisions in whole or in part. Hopefully, the revised UDDA will provide clarity and consistency about the legal distinction between life and death for physicians, lawyers, and the public at large. The events that led to the formation of the drafting committee and the potential consequences of revising the UDDA are discussed herein.
The RUDDA affirms that the “medical standards” should be based on the AAN guidelines, (1) but it is necessary to discuss the use of ancillary tests, especially in primary posterior fossa lesions.
Although Jahi McMath fulfilled clinical DNC criteria, the preservation of intracranial structures, EEG over 2 μV, conservation of HRV components, and autonomic reactivity response to the “mother talks” stimulus, demonstrated remaining brain function in both brainstem and cerebral hemispheres, rejecting that she was braindead.(2)
The inferior hypophyseal arteries branch off the extradural segments of the internal carotids are protected from augmented intracranial pressure, and then pathologic studies have demonstrated that the hypothalamus-pituitary region has mild or non-ischemic lesions in braindead cases. As Shewmon emphasized, hypothalamic functions are more significant to the functioning of the “organism as a whole” than any of the brainstem reflexes.(3) This issue requires more academic and medical discussion. (2)
Pallis emphasized that the ascending reticular formation gives rise to a generalized activation of the cortex, producing the necessary arousal (capacity for consciousness, but In fact, two physiological components control conscious behavior: arousal and awareness.(4)
The RUDDA paragraph (1) should be corrected in a way like this:
“irreversible cessation of functions of the entire brain, including the brainstem, leading to unresponsive coma with loss of both components of consciousness (arousal and awareness),…..”.
Dr. Machado proposed a new standard of human death.(4)
• Definition: Irreversible loss of both components of consciousness which provide the key human attributes and the highest level of control in the hierarchy of integrating functions within the human organism.
• Anatomical substratum: Irreversible destruction of the anatomic and functional substratum throughout the whole brain, for the generation of both components of consciousness (arousal and awareness).
Relative’s permission to demonstrate DNC is related to the apnea test (AT). Regarding the AT, there are two opposite directions. Those who defend that if the AT is performed using a specific procedure it is completely safe. (5) Other authors assure that the AT is totally dangerous. (3)
The AAN guidelines affirm that if an AT cannot be done or has to be aborted, DNC can still be performed by ancillary tests. (5) Hence, a practical solution would be to include ancillary tests in DNC and leave the AT as the last procedure.
We agree with the RUDDA (1) that families should not have the legal authority to refuse the medical decision to perform DNC.
Importance
There are inconsistencies in concept, criteria, practice, and documentation of brain death/death by neurologic criteria (BD/DNC) both internationally and within countries.
Objective
To formulate a consensus statement of recommendations on determination of BD/DNC based on review of the literature and expert opinion of a large multidisciplinary, international panel.
Process
Relevant international professional societies were recruited to develop recommendations regarding determination of BD/DNC. Literature searches of the Cochrane, Embase, and MEDLINE databases included January 1, 1992, through April 2020 identified pertinent articles for review. Because of the lack of high-quality data from randomized clinical trials or large observational studies, recommendations were formulated based on consensus of contributors and medical societies that represented relevant disciplines, including critical care, neurology, and neurosurgery.
Evidence Synthesis
Based on review of the literature and consensus from a large multidisciplinary, international panel, minimum clinical criteria needed to determine BD/DNC in various circumstances were developed.
Recommendations
Prior to evaluating a patient for BD/DNC, the patient should have an established neurologic diagnosis that can lead to the complete and irreversible loss of all brain function, and conditions that may confound the clinical examination and diseases that may mimic BD/DNC should be excluded. Determination of BD/DNC can be done with a clinical examination that demonstrates coma, brainstem areflexia, and apnea. This is seen when (1) there is no evidence of arousal or awareness to maximal external stimulation, including noxious visual, auditory, and tactile stimulation; (2) pupils are fixed in a midsize or dilated position and are nonreactive to light; (3) corneal, oculocephalic, and oculovestibular reflexes are absent; (4) there is no facial movement to noxious stimulation; (5) the gag reflex is absent to bilateral posterior pharyngeal stimulation; (6) the cough reflex is absent to deep tracheal suctioning; (7) there is no brain-mediated motor response to noxious stimulation of the limbs; and (8) spontaneous respirations are not observed when apnea test targets reach pH <7.30 and Paco2 ≥60 mm Hg. If the clinical examination cannot be completed, ancillary testing may be considered with blood flow studies or electrophysiologic testing. Special consideration is needed for children, for persons receiving extracorporeal membrane oxygenation, and for those receiving therapeutic hypothermia, as well as for factors such as religious, societal, and cultural perspectives; legal requirements; and resource availability.
Conclusions and Relevance
This report provides recommendations for the minimum clinical standards for determination of brain death/death by neurologic criteria in adults and children with clear guidance for various clinical circumstances. The recommendations have widespread international society endorsement and can serve to guide professional societies and countries in the revision or development of protocols and procedures for determination of brain death/death by neurologic criteria, leading to greater consistency within and between countries.
The legal standard for the determination of death by neurologic criteria in the United States is laid out in the Uniform Determination of Death Act (UDDA), which requires the irreversible cessation of all functions of the entire brain. Most other nations endorse a “whole-brain” standard as well. However, current practice in the determination of death by neurologic criteria is not consistent with this legal standard, because some patients who are diagnosed as brain-dead, in fact retain some brain function, or retain the capacity for the return of some brain function. In response, the American Academy of Neurology published updated guidelines, which assert that hypothalamic function is consistent with the neurological standard enshrined in the UDDA. Others have suggested that it is an open question whether the hypothalamus and pituitary are part of “the entire brain,” as delineated in the UDDA. While we agree that determination of death practices are worthy of continued dialogue and refinement in practice that dialogue must adhere to reasonable standards of logic and scientific accuracy.
Ethical and legal questions persist in the bioethics and clinical communities surrounding the determination of death by neurologic criteria (DNC). Among challenges to the determination of DNC are questions about the physician’s role in the process. Once the exam is performed, if the patient meets criteria, the patient-physician relationship terminates. Whether informed consent is required to perform the exam, however, is a subject of ongoing controversy. Recent court cases also consider whether informed consent should occur prior to the determination of DNC. Those who argue against consent suggest that physicians have an obligation to determine death and the examination for DNC is required to make this determination. Those who support obtaining informed consent prior to the examination argue that informed consent is required prior to any examination, treatment, or test, following principles of biomedical ethics. This paper reflects on the existing debate about whether consent is necessary, ultimately concluding that is legally permissible and ethically required.
When a new, brain-based definition of death was proposed fifty years ago, no one realized that the issue would remain unresolved for so long. Recently, six new controversies have added to the debate: whether there is a right to refuse apnea testing, which set of criteria should be chosen to measure the death of the brain, how the problem of erroneous testing should be handled, whether any of the current criteria sets accurately measures the death of the brain, whether standard criteria include measurements of all brain functions, and how minorities who reject whole-brain-based definitions should be accommodated. These controversies leave little hope of consensus on how to define death for social and public policy purposes. Rather, there is persistent disagreement among proponents of three major groups of definitions of death: whole-brain, cardiocirculatory or somatic, and higher-brain. Given the persistence and reasonableness of each of these groups of definitions, public policy should permit individuals and their valid surrogates to choose among them.
Religious objections to brain death are common among Orthodox Jews. These objections often lead to conflicts between families of patients who are diagnosed with brain death, and physicians and hospitals. Israel, New York and New Jersey (among other jurisdictions) include accommodation clauses in their regulations or laws regarding the determination of death by brain-death criteria. The purpose of these clauses is to allow families an opportunity to oppose or even veto (in the case of Israel and New Jersey) determinations of brain death. In New York, the extent and duration of this accommodation period are generally left to the discretion of individual institutions. Jewish tradition has embraced cultural and psychological mechanisms to help families cope with death and loss through a structured process that includes quick separation from the physical body of the dead and a gradual transition through phases of mourning (Aninut,Kriah, timely burial, Shiva, Shloshim, first year of mourning). This process is meant to help achieve closure, acceptance, support for the bereaved, commemoration, faith in the afterlife and affirmation of life for the survivors. We argue that the open-ended period of contention of brain death under the reasonable accommodation laws may undermine the deep psychological wisdom that informs the Jewish tradition. By promoting dispute and conflict, the process of inevitable separation and acceptance is delayed and the comforting rituals of mourning are deferred at the expense of the bereft family. Solutions to this problem may include separating discussions of organ donation from those concerning the diagnosis of brain death per se, allowing a period of no escalation of life-sustaining interventions rather than unilateral withdrawal of mechanical ventilation, engagement of rabbinical leaders in individual cases and policy formulations that prioritize emotional support for families.
The whole-brain criterion of death provides that a person who has irreversibly lost all clinical functions of the brain is dead. Bedside brain death (BD) tests permit physicians to determine BD by showing that the whole-brain criterion of death has been fulfilled. In a nonsystematic literature review, we identified and analyzed case reports of a mismatch between the whole-brain criterion of death and bedside BD tests. We found examples of patients diagnosed as BD who showed (1) neurologic signs compatible with retained brain functions, (2) neurologic signs of uncertain origin, and (3) an inconsistency between standard BD tests and ancillary tests for BD. Two actions can resolve the mismatch between the whole-brain criterion of death and BD tests: (1) loosen the whole-brain criterion of death by requiring only the irreversible cessation of relevant brain functions and (2) tighten BD tests by requiring an ancillary test proving the cessation of intracranial blood flow. Because no one knows the precise brain functions whose loss is necessary to fulfill the whole-brain criterion of death, we advocate tightening BD tests by requiring the absence of intracranial blood flow.
The conception and the determination of brain death continue to raise scientific, legal, philosophical, and religious controversies. While both the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in 1981 and the President’s Council on Bioethics in 2008 committed to a biological definition of death as the basis for the whole-brain death criteria, contemporary neuroscientific findings augment the concerns about the validity of this biological definition. Neuroscientific evidentiary findings, however, have not yet permeated discussions about brain death. These findings have critical relevance (scientifically, medically, legally, morally, and religiously) because they indicate that some core assumptions about brain death are demonstrably incorrect, while others lack sufficient evidential support. If behavioral unresponsiveness does not equate to unconsciousness, then the philosophical underpinning of the definition based on loss of capacity for consciousness as well as the criteria, and tests in brain death determination are incongruent with empirical evidence. Thus, the primary claim that brain death equates to biological death has then been de facto falsified. This conclusion has profound philosophical, religious, and legal implications that should compel respective authorities to (1) reassess the philosophical rationale for the definition of death, (2) initiate a critical reappraisal of the presumed alignment of brain death with the theological definition of death in Abrahamic faith traditions, and (3) enact new legislation ratifying religious exemption to death determination by neurologic criteria.
We compare and discuss three cases including: a clearly brain-dead patient, a vegetative state/unresponsive wakefulness syndrome (VS/UWS) patient and a patient diagnosed as brain-dead (BD) demonstrating some but not all clinical features of a BD state. Two of the patients demonstrated clear presentation allowing for an effective determination of state of death or consciousness. One patient, in comparison to the other two, presented with a complete absence of brainstem reflexes, absence of spontaneous driving to breath, and required permanent mechanical ventilation. Nonetheless, preservation of intracranial structures, remaining brain function in both brainstem and cerebral hemispheres was evidenced in the third case similar to the reported VS/UWS patient. Moreover, autonomic reactivity to mother's voice stimulation precluded the diagnosis of a BD in the latter case. This third patient was not comatose. The clinical examination demonstrated complete absence of brainstem reflexes, and no spontaneous driving to breath. This patient did not appear to be a VS/UWS, as she had not shown intermittent wakefulness with measurable sleep-wake cycles, and variably preserved cranial nerve reflexes. Therefore, the possibility of a responsive wakefulness state-minimally conscious state (MCS), or MCS emergence state was also excluded. This third patient in contradistinction to the other two demonstrates features similar to BD states, without being brain-dead, comatose, or VS/UWS or MCS states, and therefore rests somewhere on the spectrum of clinical consciousness. The importance of this paper is in that it highlights some of the difficulties in the clinical classification of states of consciousness, when the evaluation is categorized, showing that one of the patients presented rests somewhere else on the spectrum of clinical consciousness. Keywords: Brain death (BD); persistent vegetative state, unresponsive wakefulness syndrome (PVS/UWS), minimally conscious state (MCS), EEG, magnetic resonance imaging (MRI), autonomic nervous system (ANS), heart rate variability (HRV).
Death is defined in the Quran with a single criterion of irreversible separation of the ruh (soul) from the body. The Quran is a revelation from God to man, and the primary source of Islamic knowledge. The secular concept of death by neurological criteria, or brain death, is at odds with the Quranic definition of death. The validity of this secular concept has been contested scientifically and philosophically. To legitimize brain death for the purpose of organ donation and transplantation in Muslim communities, Chamsi-Pasha and Albar (concurring with the US President’s Council on Bioethics) have argued that irreversible loss of capacity for consciousness and breathing (apneic coma) in brain death defines true death in accordance with Islamic sources. They have postulated that the absence of nafs (personhood) and nafas (breath) in apneic coma constitutes true death because of departure of the soul (ruh) from the body. They have also asserted that general anesthesia is routine in brain death before surgical procurement. Their argument is open to criticism because: (1) the ruh is described as the essence of life, whereas the nafs and nafas are merely human attributes; (2) unlike true death, the ruh is still present even with absent nafs and nafas in apneic coma; and (3) the routine use of general anesthesia indicates the potential harm to brain-dead donors from surgical procurement. Postmortem general anesthesia is not required for autopsy. Therefore, the conclusion must be that legislative enforcement of nonconsensual determination of neurological (brain) death and termination of life-support and medical treatment violates the religious rights of observant Muslims.
Background
This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference. Methods
Conceptual, philosophical, and ethical analysis. ResultsI first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act. Conclusions
My intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death.
The case of Jahi McMath has reignited a discussion concerning how society should define death. Despite pronouncing McMath brain dead based on the American Academy of Neurology criteria, the court ordered continued mechanical ventilation to accommodate the family’s religious beliefs. Recent case law suggests that the potential for a successful challenge to the neurologic criteria of death provisions of the Uniform Determination of Death Act are greater than ever in the majority of states that have passed religious freedom legislation. As well, because standard ethical claims regarding brain death are either patently untrue or subject to legitimate dispute, those whose beliefs do not comport with the brain death standard should be able to reject it.
The determination of death by neurological criteria remains controversial scientifically, culturally, and legally, worldwide. In the United Kingdom, although the determination of death by neurological criteria is not legally codified, the Code of Practice of the Academy of Medical Royal Colleges is customarily used for neurological (brainstem) death determination and treatment withdrawal. Unlike some states in the US, however, there are no provisions under the law requiring accommodation of and respect for residents' religious rights and commitments when secular conceptions of death based on medical codes and practices conflict with a traditional concept well-grounded in religious and cultural values and practices. In this article, we analyse the medical, ethical, and legal issues that were generated by the recent judgement of the High Court of England and Wales in Re: A (A Child) [2015] EWHC 443 (Fam). Mechanical ventilation was withdrawn in this case despite parental religious objection to a determination of death based on the code of practice. We outline contemporary evidence that has refuted the reliability of tests of brainstem function to ascertain the two conjunctive clinical criteria for the determination of death that are stipulated in the code of practice: irreversible loss of capacity for consciousness and somatic integration of bodily biological functions. We argue that: (1) the tests of brainstem function were not properly undertaken in this case; (2) the two conjunctive clinical criteria set forth in the code of practice cannot be reliably confirmed by these tests in any event; and (3) absent authentication of the clinical criteria of death, the code of practice (in fact, although implicitly rather than explicitly) wrongly invokes a secular definition of death based on the loss of personhood. Consequently, the moral obligation of a pluralistic society to honor and respect diverse religious convictions to the greatest extent possible is being violated. Re A (A Child) is contrasted with the US case of Jahi McMath in which the court accommodated parental religious objection to the determination of neurological death codified in the Uniform Determination of Death Act. We conclude that the legal system in the United Kingdom should not favour a secular definition of death over a definition of death that is respectful of religious values about the inviolability and sanctity of life. We recommend the legal recognition of religious accommodation in death determination to facilitate cultural sensitivity and compassionate care to patients and families in a pluralistic society.
Electronic supplementary material
The online version of this article (doi:10.1007/s10730-016-9307-y) contains supplementary material, which is available to authorized users.
Brain death is different from the traditional, biological conception of death. Although there is no possibility of a meaningful recovery, considerable scientific evidence shows that neurological and other functions persist in patients accurately diagnosed as brain dead. Elsewhere with others, I have argued that brain death should be understood as an unacknowledged status legal fiction. A legal fiction arises when the law treats something as true, though it is known to be false or not known to be true, for a particular legal purpose (like the fiction that corporations are persons). Moving towards greater transparency, it is legally and ethically justifiable to use this fiction to determine when to permit treatment withdrawal and organ transplantation. However, persistent controversy and recent conflicts between hospitals and families over the treatment of brain-dead patients demonstrate the need for clearer limits on the legal fiction of brain death. This Article argues that more people should recognize that brain death is a legal fiction and further contends that existing scholarship has inadequately addressed the appropriate use of the legal fiction of brain death in legal conflicts. For instance, as in Jahi McMath’s case (in which a mother wanted to keep her daughter on a ventilator after she was determined brain dead), families may distrust physicians and hospitals who fail to acknowledge that brain death is a legal fiction. Legislators in most states have ignored the need to permit statutory exceptions for individuals with strong sanctity of life views. When hospitals treat braindead pregnant women, as in Marlise Mu˜ noz’s case, courts have failed to weigh the fundamental constitutional rights of pregnant women against the state’s interests. Finally, judges and legislators should sometimes “pierce the veil” of brain death and should not use the legal fiction in cases involving: (1) religious and moral objections, (2) insurance reimbursement for extended care of brain-dead patients, (3) maintenance of pregnant, brain-dead women, and (4) biomedical research. The Article concludes with general guidance for judges, legislators, and other legal actors to use regarding legal fictions.
Substantial progress has been made over the past two decades in detecting, predicting and promoting recovery of consciousness in patients with disorders of consciousness (DoC) caused by severe brain injuries. Advanced neuroimaging and electrophysiological techniques have revealed new insights into the biological mechanisms underlying recovery of consciousness and have enabled the identification of preserved brain networks in patients who seem unresponsive, thus raising hope for more accurate diagnosis and prognosis. Emerging evidence suggests that covert consciousness, or cognitive motor dissociation (CMD), is present in up to 15–20% of patients with DoC and that detection of CMD in the intensive care unit can predict functional recovery at 1 year post injury. Although fundamental questions remain about which patients with DoC have the potential for recovery, novel pharmacological and electrophysiological therapies have shown the potential to reactivate injured neural networks and promote re-emergence of consciousness. In this Review, we focus on mechanisms of recovery from DoC in the acute and subacute-to-chronic stages, and we discuss recent progress in detecting and predicting recovery of consciousness. We also describe the developments in pharmacological and electrophysiological therapies that are creating new opportunities to improve the lives of patients with DoC.
In this issue of JAMA, contributors to the World Brain Death Project present an international consensus report on criteria for the diagnosis of brain death, or determination of death by neurologic criteria (BD/DNC).¹ The report addresses inconsistencies in clinical guidelines across different countries and focuses attention on the need for better education and certification of clinicians who are authorized to make this clinical diagnosis.
Prompted by concerns raised by the rise in litigations, which challenge the legal status of brain death (BD), Lewis and colleagues recently proposed a revision of the Uniform Determination of Death Act (UDDA). The revision consists of (i) narrowing down the definition of BD to the loss of specific brain functions, namely those functions that can be assessed on bedside neurological examination; (ii) requiring that the determination of BD must be in accordance with the specific guidelines designated in the revision; and (iii) eliminating the necessity for obtaining consent prior to performing the tests for BD determination. By analyzing Lewis and colleagues’ revision, this article shows that this revision is fraught with difficulties. Therefore, this article also proposes two approaches for an ethical revision of the UDDA; the first is in accordance with scientific realism and Christian anthropology, while the second is grounded in trust and respect for persons. If the UDDA is to be revised, then it should be based on sound ethical principles in order to resolve the ongoing BD controversies and rebuild public trust.
Summary
This article critically examines the recent revision of the Uniform Determination of Death Act (UDDA) advanced by Lewis and colleagues. The revision only further reinforces the status quo of brain death without taking into account the root cause of the litigations and controversies about the declaration of death by neurological criteria. In view of this deficiency, this article offers two approaches to revising the UDDA, both of which are founded on sound moral principles.
The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria (DNC). The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter. Consent has been required in several trial cases in Montana and Kansas but not in Virginia and Nevada. In this paper, we analyze and evaluate the legal and ethical bases for requiring consent before apnea testing and defend such a requirement by appealing to ethical and legal principles of informed consent and battery and the right to refuse medical treatment. We conclude by considering and rebutting two major objections to a consent requirement for apnea testing: (1) a justice-based objection to allocate scarce resources fairly and (2) a social utility objection that halting the diagnosis of brain death will reduce the number of organ donors.
The concept of brain death, or the determination of death by neurological criteria, was first proposed by a Harvard committee in the United States in 1968,¹ and then adopted into the Uniform Determination of Death Act (UDDA) in 1981.² Although the UDDA was widely accepted and endorsed by medical professional organizations, in recent years the concept has come under greater scrutiny and is increasingly the focus of legal challenges. Most urgent is that the current diagnostic standards do not satisfy the wording of the law. The UDDA defines brain death as the “irreversible cessation of all functions of the entire brain.” Yet, it is now widely acknowledged that some patients who meet the current diagnostic standards may retain brain functions that are not included in the required tests, including hypothalamic functioning.³ Until the UDDA is revised to be more specific about which functions must be lost to satisfy the definition (such as, for example, consciousness and the capacity to breathe), current medical practice will not be in alignment with the legal standard.
Commentary: False Positives in the Diagnosis of Brain Death - Volume 28 Special Issue - MICHAEL NAIR-COLLINS, FRANKLIN G. MILLER
Disturbing cases continue to be published of patients declared brain dead who later were found to have a few intact brain functions. We address the reasons for the mismatch between the whole-brain criterion and brain death tests, and suggest solutions. Many of the cases result from diagnostic errors in brain death determination. Others probably result from a tiny amount of residual blood flow to the brain despite intracranial circulatory arrest. Strategies to lessen the mismatch include improving brain death determination training for physicians, mandating a test showing complete intracranial circulatory arrest, or revising the whole-brain criterion.
Background
Here we studied the safety of apnea testing (AT) for the determination of brain death (BD) with regard to intracranial pressure (ICP), cerebral perfusion and arterial blood gas (ABG) parameters. We hypothesized that ICP only increases when cerebral perfusion pressure (CPP) remains positive during AT.
Methods
Thirty‐four patients who fulfilled BD criteria were identified by chart review (2009‐2017). We analysed ICP, CPP and mean arterial pressure (MAP) prior to AT, during AT, and after AT, as well as arterial pH, paCO2, paO2, arterial O2‐saturation at the start and at the end of AT.
Results
ICP was 87.9±17.7 mmHg (mean ± standard deviation) prior to AT (A), 89.9±17.2 mmHg during AT (B), and 86.4±15.2 mmHg after AT (C) (p=0.9). CPP was ‐6.9±12.8 mmHg (A), ‐7.1±13.7 mmHg (B), and ‐8.6±13.0 mmHg (C) (p=0.98). MAP was 82.9±14.6 mmHg (A), 84.7±13.9 mmHg (B), and 79.7±9.6 mmHg (C) (p=0.57). Ten patients had positive CPP (8.6±4.3 mmHg), but ICP did not increase during AT. Arterial pH decreased from 7.43±0.06 to 7.22±0.06 (p<0.05), paCO2 increased from 38.6±4.2 to 69.6±8.0 mmHg (p<0.05), paO2 decreased from 416.3±113.4 to 289.2±146.5 mmHg (p<0.05), O2‐saturation was stable with 99.8±0.4% and 98.2±3.2% (p=0.39).
Conclusions
AT had no detrimental effect on ICP, CPP, MAP or oxygenation, regardless of the presence of an initially positive CPP. The lack of further ICP elevations is presumably explained by critical closing pressures above individual CPP levels during AT.
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The American Academy of Neurology holds the following positions regarding brain death and its determination, and provides the following guidance to its members who encounter resistance to brain death, its determination, or requests for accommodation including continued use of organ support technology despite neurologic determination of death. The medical professions ability to determine death accurately, whether caused by irreversible brain or circulatory failure, is integral to the maintenance of the public trust in the professions fulfillment of its fiduciary responsibility to its patients. In 1981, the Uniform Determination of Death Act (UDDA) was published, a statute proposed by the American Bar Association, the American Medical Association, the National Conference of Commissioners on Uniform State Laws, and the Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.1-4 The UDDAs position served to address a societal problem created in the mid-20th century as a consequence of the development of mechanical ventilation and other organ-sustaining technologies. As a result, irreversibly brain-injured individuals could have their physiologic existence sustained for variable periods of time. The purpose of the UDDA was to establish a uniform definition of death, determined by acceptable medical standards, that was clear and socially accepted, with the intention of being adopted in every US jurisdiction. The Presidents Commission and the UDDA considered death to be a unitary phenomenon regardless of causation, resulting from either irreversible failure of brain or circulatory function. It recognized the biological facts of universal applicability, while seeking to protect patients against ill-advised idiosyncratic pronouncements of death. The UDDA perspectives are supported by a preponderance of medical and legal authorities, the original UDDA wording having been supported by the American Academy of Neurology (AAN).1,5 Brain death is death of the individual due to irreversible loss of function to the entire brain. Otherwise known as death by neurologic criteria, it is accepted as legal death in all US jurisdictions, as determined by one or more medical professionals through application of accepted medical standards.5-11 The standards for adult and pediatric patients that are currently widely accepted by the medical profession are the 2010 Evidence-Based Guideline Update: Determining Brain Death in Adults (endorsed by the Neurocritical Care Society, the Child Neurology Society, the Radiologic Society of North America, and the American College of Radiology) and the 2011 Guidelines for the Determination of AAN = American Academy of Neurology; AAP = American Academy of Pediatrics; CNS = Child Neurology Society; SCCM=Society of Critical Care Medicine; UDDA = Uniform Determination of Death Act.
The definition of death was clearer one hundred years ago than it is today. People were declared dead if diagnosed with permanent cessation of both cardio‐circulatory function and respiratory function. But the definition has been muddled by the development of new technologies and interventions—first by cardiopulmonary resuscitation and ventilators, which were introduced in the mid‐twentieth century, and now by extracorporeal membrane oxygenation, which creates the ability to keep oxygenated blood circulating, with or without a beating heart or functioning lungs. In Defining Death: The Case for Choice, Robert Veatch and I argue that the definition of death should focus on “what change in a human being is so fundamental that we can say the individual is no longer with us as a member of the human community bearing rights such as the right not to be killed.” We assert that this decision is a normative issue about which different stakeholders may believe that different changes are fundamental, and we therefore propose that the optimal policy solution may be to allow stakeholders to choose their own definition within a reasonable range of options. There are three caveats that need to be highlighted regarding this approach.
At its inception, “brain death” was proposed not as a coherent concept but as a useful one. The 1968 Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death gave no reason that “irreversible coma” should be death itself, but simply asserted that the time had come for it to be declared so. Subsequent writings by chairman Henry Beecher made clear that, to him at least, death was essentially a social construct, and society could define it however it pleased. The first widely endorsed attempt at a philosophical justification appeared thirteen years later, with a report from the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and a seminal paper by James Bernat, Charles Culver, and Bernard Gert, which introduced the insightful tripartite scheme of concept, criterion, and tests for death. Their paper proposed that the correct concept of death is the “permanent cessation of functioning of the organism as a whole,” which tenuously remains the mainstream concept to this day. In this essay, I focus on this mainstream concept, arguing that equating brain death with death involves several levels of incoherence: between concept and criterion, between criterion and tests, between tests and concept, and between all of these and actual brain death praxis.
From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the general skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty‐eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions.
The bioethical, professional, and policy discourse over brain death criteria has been portrayed by some scholars as illustrative of the minimal influence of religious perspectives in bioethics. Three questions then lie at the core of my inquiry: What interests of secular pluralistic societies and the medical profession are advanced in examining religious understandings of criteria for determining death? Can bioethical and professional engagement with religious interpretations of death present substantive insights for policy discussions on neurological criteria for death? And finally, how extensive should the scope of policy accommodations be for deeply held religiously based dissent from neurological criteria for death? I begin with a short synopsis of a recent case litigated in Ontario, Canada, Ouanounou v. Humber River Hospital, to illuminate this contested moral terrain.
This article clarifies some issues raised by Dr. Ariane Lewis in her recent “Current Opinion/Arguments” article on the case of Jahi McMath. Review of case materials. Jahi’s case most likely represents an instance of global ischemic penumbra (GIP) mimicking brain death (BD), with intracranial blood flow too low to support neuronal function or to be detected by radionuclide scan but sufficient to prevent widespread necrosis. Her MRI scan 9 months after the ischemic insult showed gross preservation of cortical and internal structures, incompatible with there ever having been a period of completely absent blood flow. Regarding Jahi’s alleged intermittent responsiveness, the set of videos, unsystematic as they are, constitutes convincing evidence that her movements in seeming response to command are not of spinal cord origin and are indeed voluntary responses, placing her in the category of minimally conscious state (MCS). In the absence of serial examinations by experts in MCS, the benefit of the doubt should be given. Unfortunately, her death on June 22, 2018, 4½ years after the diagnosis of BD, precludes such examinations. During those 4½ years, Jahi underwent menarche, with three documented menstrual periods, and ongoing pubertal development. Her case is an important example of false-positive diagnosis of BD, demonstrating the inability of current diagnostic standards to distinguish true BD from potentially reversible brain nonfunction due to GIP. The incidence of such mimicry is impossible to determine, because in most cases a BD diagnosis becomes a self-fulfilling prophecy.
Objective:
To update the 1995 American Academy of Neurology (AAN) practice parameter on persistent vegetative state and the 2002 case definition on minimally conscious state (MCS) and provide care recommendations for patients with prolonged disorders of consciousness (DoC).
Methods:
Recommendations were based on systematic review evidence, related evidence, care principles, and inferences using a modified Delphi consensus process according to the AAN 2011 process manual, as amended.
Recommendations:
Clinicians should identify and treat confounding conditions, optimize arousal, and perform serial standardized assessments to improve diagnostic accuracy in adults and children with prolonged DoC (Level B). Clinicians should counsel families that for adults, MCS (vs vegetative state [VS]/unresponsive wakefulness syndrome [UWS]) and traumatic (vs nontraumatic) etiology are associated with more favorable outcomes (Level B). When prognosis is poor, long-term care must be discussed (Level A), acknowledging that prognosis is not universally poor (Level B). Structural MRI, SPECT, and the Coma Recovery Scale-Revised can assist prognostication in adults (Level B); no tests are shown to improve prognostic accuracy in children. Pain always should be assessed and treated (Level B) and evidence supporting treatment approaches discussed (Level B). Clinicians should prescribe amantadine (100-200 mg bid) for adults with traumatic VS/UWS or MCS (4-16 weeks post injury) to hasten functional recovery and reduce disability early in recovery (Level B). Family counseling concerning children should acknowledge that natural history of recovery, prognosis, and treatment are not established (Level B). Recent evidence indicates that the term chronic VS/UWS should replace permanent VS, with duration specified (Level B). Additional recommendations are included.
The "dead-donor rule" states that, in any case of vital organ donation, the potential donor should be determined to be dead before transplantation occurs. In many countries around the world, neurological criteria can be used to legally determine death (also referred to as brain death). Nevertheless, there is considerable controversy in the bioethics literature over whether brain death is the equivalent of biological death. This international legal review demonstrates that there is considerable variability in how different jurisdictions have evolved to justify the legal status of brain death and its relationship to the dead-donor rule. In this article, we chose to review approaches that are representative of many different jurisdictions-the United States takes an approach similar to that of many European countries; the United Kingdom's approach is followed by Canada, India, and influences many other Commonwealth countries; Islamic jurisprudence is applicable to several different national laws; the Israeli approach is similar to many Western countries, but incorporates noteworthy modifications; and Japan's relatively idiosyncratic approach has received some attention in the literature. Illuminating these different justifications may help develop respectful policies regarding organ donation within countries with diverse populations and allow for more informed debate about brain death and the dead-donor rule.
In response to a number of recent lawsuits related to brain death determination, the American Academy of Neurology Ethics, Law, and Humanities Committee convened a multisociety quality improvement summit in October 2016 to address, and potentially correct, aspects of brain death determination within the purview of medical practice that may have contributed to these lawsuits. This article, which has been endorsed by multiple societies that are stakeholders in brain death determination, summarizes the discussion at this summit, wherein we (1) reaffirmed the validity of determination of death by neurologic criteria and the use of the American Academy of Neurology practice guideline to determine brain death in adults; (2) discussed the development of systems to ensure that brain death determination is consistent and accurate; (3) reviewed strategies to respond to objections to determination of death by neurologic criteria; and (4) outlined goals to improve public trust in brain death determination.
New technologies and medical treatments have complicated questions such as how to determine the moment when someone has died. The result is a failure to establish consensus on the definition of death and the criteria by which the moment of death is determined. This creates confusion and disagreement not only among medical, legal, and insurance professionals but also within families faced with difficult decisions concerning their loved ones. Distinguished bioethicists Robert M. Veatch and Lainie F. Ross argue that the definition of death is not a scientific question but a social one rooted in religious, philosophical, and social beliefs. Drawing on history and recent court cases, the authors detail three potential definitions of death - the whole-brain concept; the circulatory, or somatic, concept; and the higher-brain concept. Because no one definition of death commands majority support, it creates a major public policy problem. The authors cede that society needs a default definition to proceed in certain cases, like those involving organ transplantation. But they also argue the decision-making process must give individuals the space to choose among plausible definitions of death according to personal beliefs. Taken in part from the authors' latest edition of their groundbreaking work on transplantation ethics, Defining Death is an indispensable guide for professionals in medicine, law, insurance, public policy, theology, and philosophy as well as lay people trying to decide when they want to be treated as dead.
A 2-year-old boy with severe head trauma was diagnosed brain dead according to the 2011 Pediatric Guidelines. Computed tomographic (CT) scan showed massive cerebral edema with herniation. Intracranial pressures were extremely high, with cerebral perfusion pressures around 0 for several hours. An apnea test was initially contraindicated; later, one had to be terminated due to oxygen desaturation when the Pco2 had risen to 57.9 mm Hg. An electroencephalogram (EEG) was probably isoelectric but formally interpreted as equivocal. Tc-99m diethylene-triamine-pentaacetate (DTPA) scintigraphy showed no intracranial blood flow, so brain death was declared. Parents declined organ donation. A few minutes after withdrawal of support, the boy began to breathe spontaneously, so the ventilator was immediately reconnected and the death declaration rescinded. Two hours later, life support was again removed, this time for prognostic reasons; he did not breathe, and death was declared on circulatory-respiratory grounds. Implications regarding the specificity of the guidelines are discussed.
The Uniform Determination of Death Act and the American Academy of Neurology's Guidelines for Determination of Death define procedures for diagnosis of brain death before organ procurement for transplantation, including clinical assessment and apnea test. Autotriggering of mechanical ventilators can occur in both brain dead and living patients. A case is reported in which procurement was delayed because ventilator self-cycling was confused for brainstem-mediated respiratory effort. Background knowledge to effectively troubleshoot ventilator self-cycling is offered so that unnecessary delays in brain death testing can be avoided.
A patient who has been declared brain dead is considered to be both legally and clinically dead. However, we report 2 pediatric cases in which the patients demonstrated clinical signs of brain stem function that are not recognized or tested in current Canadian or US guidelines.